Swipe om te navigeren naar een ander artikel
The online version of this article (doi:10.1007/s10803-016-2708-6) contains supplementary material, which is available to authorized users.
Recruiting adults with autism spectrum disorders (ASD) into research poses particular difficulties; longitudinal studies face additional challenges. This paper reports on a mixed methods study to identify factors influencing the participation in longitudinal autism research of adults with ASD, including those with an intellectual disability, and their carers. Common and differentiating factors influencing the research participation of participants are identified and discussed. Factors influencing participation were found to differ both between and within participant categories. We propose a dichotomy whereby factors influencing research participation can be classified as those arising from a participant’s values, which act as either a motivator or a deterrent; and those based on convenience, which act as either an enabler or inhibitor. These findings are applicable to research studies that seek to recruit adults with ASD as participants.
Log in om toegang te krijgen
Met onderstaand(e) abonnement(en) heeft u direct toegang:
Balfe, M., & Tantam, D. (2010). A descriptive social and health profile of a community sample of adults and adolescents with Asperger syndrome. BMC Research Notes,3(300), 1–7.
Baron-Cohen, S. (2000). Theory of mind and autism: A review. In L. M. Glidden (Ed.), International review of research in mental retardation (Vol. 23, pp. 169–184). Cambridge: Academic Press.
Barton, C. A., May, C., Mészáros, D., Matheson, M. C., Jenkins, M., Giles, G., et al. (2012). Reasons for ongoing participation in a longitudinal cohort study. Australian and New Zealand Journal of Public Health,36(4), 397–398. CrossRef
Beadle-Brown, J., Ryan, S., Windle, K., Holder, J., Turnpenny, A., Smith, N., Richardson, L., & Whelton, B. (2012). Engagement of people with long- term conditions in health and social care research: Barriers and facilitators to capturing the views of seldom- heard populations. (Discussion Paper 2850): Quality and Outcomes of Person-centred Care Policy Research Unit.
Bell, K. (2013). Participants’ motivations and co-construction of the qualitative research process. Qualitative Social Work,12(4), 523–539. CrossRef
Bonk, J. (2010). A road map for the recruitment and retention of older adult participants for longitudinal studies. Journal of the American Geriatrics Society,58(2), 303–307. CrossRef
Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis. Thousand Oaks: Sage.
Clark, T. O. M. (2010). On ‘being researched’: Why do people engage with qualitative research? Qualitative Research,10(4), 399–419. CrossRef
Derguy, C., Michel, G., M’bailara, K., Roux, S., & Bouvard, M. (2015). Assessing needs in parents of children with autism spectrum disorder: A crucial preliminary step to target relevant issues for support programs. Journal of Intellectual and Developmental Disability,40(2), 156–166. CrossRef
Gerber, F., Bessero, S., Robbiani, B., Courvoisier, D. S., Baud, M. A., Traoré, M.-C., et al. (2011). Comparing residential programmes for adults with autism spectrum disorders and intellectual disability: outcomes of challenging behaviour and quality of life. Journal of Intellectual Disability Research,55(9), 918–932. CrossRefPubMed
Guest, G., MacQueen, K. M., & Namey, E. E. (2011). Applied thematic analysis. Thousand Oaks: Sage.
Haas, K., Costley, D., Falkmer, M., Richdale, A., Sofronoff, K., & Falkmer, T. (2014). Optimising the recruitment and retention of adults for longitudinal autism research: A mixed methods study. Brisbane: Cooperative Research Centre for Living with Autism. http://www.autismcrc.com.au/reports.
Harrington, C., Foster, M., Rodger, S., & Ashburner, J. (2014). Engaging young people with Autism Spectrum Disorder in research interviews. British Journal of Learning Disabilities,42(2), 153–161. CrossRef
Howlin, P. (2005). Outcomes in autism spectrum disorders. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (3rd ed., Vol. 1: Diagnosis, development, neurobiology, and behavior, pp. 201–220).
Kirkland, S. A., Raina, P. S., Wolfson, C., Strople, G., Kits, O., Dukeshire, S., et al. (2009). Exploring the acceptability and feasibility of conducting a large longitudinal population-based study in Canada. Canadian Journal of Aging,28(3), 231–242. CrossRef
MacLeod, A. G., Lewis, A., & Robertson, C. (2014). ‘CHARLIE: PLEASE RESPOND!’ Using a participatory methodology with individuals on the autism spectrum. International Journal of Research and Method in Education,37(4), 407–420. CrossRef
Madriaga, M. (2010). ‘I avoid pubs and the student union like the plague’: Students with Asperger Syndrome and their negotiation of university spaces. Children’s Geographies,8(1), 39–50. CrossRef
Mapstone, J., Elbourne, D., & Roberts, I. (2007). Strategies to improve recruitment to research studies (Review). Cochrane Database of Systematic Reviews, Issue 2, Art No MR000013.
Marcantonio, E. R., Aneja, J., Jones, R. N., Alsop, D. C., Fong, T. G., Crosby, G. J., et al. (2008). Maximizing clinical research participation in vulnerable older persons: Identification of barriers and motivators. Journal of the American Geriatrics Society,56(8), 1522–1527. CrossRefPubMedPubMedCentral
Mazefsky, C. A., & White, S. W. (2014). Adults with autism. In F. R. Volkmar, R. Paul, S. J. Rogers, & K. A. Pelphrey (Eds.), Handbook of autism and pervasive developmental disorders (4th ed.). New York: Wiley.
Ouellette-Kuntz, H., Lunsky, Y., Lysaght, R., Martin, L., & Saaltink, R. (2013). Partnering for research in the field of intellectual/developmental disabilities—Lessons for participant recruitment. Journal on Developmental Disabilities,19(2), 25–35.
- Factors Influencing the Research Participation of Adults with Autism Spectrum Disorders
- Springer US